The Bad Side of Patient Forums / Social Media Groups

In searching for medical advice, be careful about involvement with online medical patient forums and support groups on social media. Not all online medical interest groups and forums maintain high standard of enrollment and moderation. Individuals certified in their knowledge and direction are musts for a good group. Without proper vigilance and critical thinking, you may encounter dicey situations or be influenced by inherent bias. This article delves into the bad side of online patient forums and medical interest groups for patients with rare diseases. I write from my own experience.

In searching for medical advice, be careful about involvement with online medical patient forums and support groups on social media. Not all online medical interest groups and forums maintain high standard of enrollment and moderation. Individuals certified in their knowledge and direction are musts for a good group. Without proper vigilance and critical thinking, you may encounter dicey situations or be influenced by inherent bias. This article delves into the bad side of online patient forums and medical interest groups for patients with rare diseases. I write from my own bad experiences.

It can be extremely lonely having a chronic illness. In between doctors’ appointments, time can pass at a snail’s pace and questions arise. Some doctors are not as good at communicating as others via patient portals outside of appointments as others. During appointments, there can be disruptive interruptions requiring the doctor’s attention. You may feel left in the lurch and still have questions you feel need to be answered.

Imposters and Predators

You may be led to explore social media interest groups and online medical forums. I highly discourage this. You simply do not know who you are dealing with in faceless online groups. Some people join these groups to prey on others. These may be pure imposters, or people who have other motives than simply participating and sharing. As in any realm of social media, there are folks participating just to promote themselves or a product. Some are dysfunctional sufferers who are in no actual position to give advice or knowledgeable information. Actual continuous factual moderation for online patient groups is rare. Some people online act more irresponsibly than they might in person, because nobody knows “who they are.” Safety issues are one bad side of patient forums and social media groups.

In my own experience with online medical patient forums and medical interest groups, I had some shocking interactions. My first eye opening experience involved delving into Myasthenia Gravis forums. In starting IVIG treatments, I felt lost and insecure. I feared the uncertainties of living with a worsened case of the disease. I was grasping for any idea about how my future might be shaping up. Even though MG is a disease where everyone is different, I hoped I’d find a common thread for information. It was such a horrible feeling to be completely physically reliant on others for even getting out of bed. I just wanted some hope.

Free photo 2804296 © Maksym Yemelyanov – Dreamstime.com

Insufficient Case Knowledge

In my involvement with online patient groups, one thing stood out. The majority of people want simple answers to extremely complicated problems. I found that most of these problems would need an educated overview for proper assessment. This is why you see a doctor. You see them for their expertise in handling these very complicated situations in a succinct, effective manner. Most online forum participants don’t have this overview. Oftentimes the people who are loudest in responding are the ones who least know what they are talking about. These people are very convincing in their confidence, because they aren’t aware that they are actually wrong.

Drama

Medical forums and groups can be negative for your mental health, because most people on medical forums are already very angry. This is understandable. If they felt they were getting all the information and support they needed, they most likely wouldn’t be turning to online sources. I had to tell one desperate caregiver they were actually making the patient worse. The amount of rage and blaming the patient for this life disrupting illness was not going to help anyone. They expressed so much stress and discord, it could nothing other than affect the patient negatively (see Advice for Caregivers).

Their solid conviction of knowing more than the doctor, mixed with hurling insults about the healthcare provider was also extremely disturbing. All of this was while making no rational sense themselves. In trying to find information and help for myself, I got dragged into someone else’s drama. It was an eye opening experience. I knew I’d rather trust my doctor, or move on to another, than to believe people like this. Bad advice is another drawback to patient forums and social media groups.

From then on, I tried to become more patient about searching for answers about Myasthenia Gravis. I got to “know my disease” better in myself, developing the patience to observe patterns and trends in my own symptoms. Online groups were never tempting until about two years later. I developed extremely painful muscular symptoms. I approached my neurologist out of sheer desperation, but there were no quick answers. Physical examinations led to a hypothesis that I might have a progressive disease that would only get unspeakably worse. It’s disease so rare it makes Myasthenia Gravis look like the common cold.

Group Think of Misery

It was terrifying and I felt desperate. Then I joined an online group for sufferers of the disease. I suppose I convinced myself I joined the group to collect evidence *against* me having the disease. My own neurologist was not an expert in the disease. Getting to communicate with experts required a positive overall result to a lengthy battery of tests. Definitive results for tests (blood tests, lumbar puncture, and more) couldn’t come quickly enough! Reading others’ experiences with the disease was horrifying. It spooked and unsettled me. I felt even more anxious. In the end I felt worse than if I had left well enough alone.

Months later, when the hypothesized diagnosis was thankfully disproven, many in the online group insisted the doctor must be wrong. They asserted I must continue to seek care for this disease. It didn’t matter that I had just been declared not to have it by leading neurologists. For me, the pronouncement was cause for celebration. It didn’t matter I still didn’t exactly know what was causing my symptoms. At least it wasn’t THAT! A year out, I can concretely say I do NOT have the disease. I have gotten successful treatment for the symptoms that caused the hypothesized diagnosis in the first place. It was more important to the group’s bias that I stay, than that my life sentence of their illness be lifted. It spotlighted the notion the misery loves company – an extremely valid reason that patient forums and social media groups can be bad.

Biased Information

What should you do when questions need to be answered? For social support, stick to moderated support groups via in person meetings. In the pandemic era and onwards, tele-sessions organized by official medical caregivers are appropriate. Moderated support groups “with faces” can be a springboard to connecting people facing similar problems. Avoid [dot]com “information” sites, because they inherently exist for the purpose of selling something. Even if [dot]com sites seem informational, their information is usually biased at some level. They have an agenda of pushing product as their true main goal. The “product” can vary from treatments, to medical practices / doctors, on to publications, and the like. You may notice this blog is on a [dot]com site. I sell my art and jewelry here. My blog is here through a desire for autonomy and web ranking.

Additionally, a resource for information outside of doctor’s office visits is scholarly papers. Otherwise, much research is biased towards proving a specific result. Such research has a certain result demanded by the its sponsors. It is no longer unbiased research, true for everyone. Think of how any independent study on the safety of cigarettes varies from a study sponsored by a cigarette company. It’s a good idea to investigate for whom and why the paper is being written. There may be inherent bias.

In closing, approach your search for medical information outside of doctor’s visits with caution. Be aware that all of the traditional pitfalls of social media also occur in medical interest groups on social media. When you review information, think critically about its source, be it an online forum, or a sponsored medical paper. If you choose to become involved with groups, remain vigilant that the overall experience is actually healthy for you.

Why Pandemic Lockdown is Like Chronic Illness

How have you been feeling lately? Are you not doing as well as usual in the face of worldwide lockdowns from the COVID-19 pandemic? Is your life filled with new concerns and uncertainty with underlying anxiety? Doing a little too much symptom checking? Are you overwhelmed by the sense of isolation? Do you have a newfound fear of contagion? Has getting out of the house for grocery shopping become much more difficult than usual? Are you beset by a lack of energy, fatigue, and consequential boredom? You are going through aspects of daily living that are “normal” for many people with chronic illness. In this blog post I will compare similarities between COVID-19 lockdown and what has always been true in the lives of many chronically ill individuals.

Anxiety and Isolation

When comparing lockdown to chronic illness, even the most well adjusted person has probably suffered at least some anxiety since news first broke of the COVID-19 Corona Virus first spreading overseas. Maybe it started with predictions of a coming pandemic. That anxiety probably increased greatly as this prediction became true. Then lockdown was ordered from one county to another, one state to the next.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; anxiety
Anxiety is common for many during COVID-19 Lockdown

For many chronically ill people this feeling of unease, sensitivity, hyper awareness, and worry is a daily fact of life. Lifestyles become attuned to and adjusted around illness. Fears for ones own well being and safety can be a great source of anxiety. For some this anxiety becomes a personal lockdown order from their own psyche. Mingling with the outside world becomes intolerable due to the extreme effort needed and sense of risk this causes. This can be true, even when the individual might still long to be social. It’s just too hard.

When you are chronically ill, isolation is often a fact of life. For many, it’s a daily fact, even with no official lockdown order in place. In comparison to lockdown, isolation from chronic illness is a long term sentence, because there is often no end in sight. The isolation from being homebound is often compounded by a lack of visitors to homes of the chronically ill. While often not being in the work force, attending school regularly, or able to join in repeating social groups or community activities, we are often forgotten and overlooked. It often seems like a case of out of sight, out of mind.

Fear of Contagion

Since my diagnosis as a chronically ill person with Myasthenia Gravis, I have had to be aware of keeping away from people who have colds or are sick. This is another aspect to consider in comparing lockdown and chronic illness. Chronic illness worsens when exposed to new contagions. This is why the chronically ill are considered high risk individuals in the COVID-19 pandemic. Comparing COVID-19 lockdown to chronic illness, the general population has experienced a heightened fear of contagion that the chronically ill deal with daily.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19 lockdown;
With new of virus spread, fear of contagion grows.

COVID-19 is especially tricky, because many carriers are asymptomatic. I’ve heard people confidently state that they don’t need to wear a mask, because they have no symptoms. This might have been advised at the onset of the virus spread, but current knowledge has changed. Each and every person who does not wear a mask in public risks infecting another person. This is what caused the need for lockdown in the first place.

Hypochondria

When all you hear every day is news about illness and its symptoms, it’s easy to start feeling ill yourself. As defined by the Oxford English Dictionary, hypochondria is an “abnormal anxiety about one’s health, especially with an unwarranted fear that one has a serious disease.” This is something I will call “hypochondria” in quotes, because in times like these worrying that you are sick is not so unusual. It’s not exactly the same thing, but a worry and sensation that heads in the same direction.

I liken this to when I was first diagnosed with Myasthenia Gravis, and I did not yet know my ebb and flow of symptoms, much less what the disease actually was. To tie in with the first paragraph’s anxiety and oversensitivity, every little physical change or hiccup was terrifying. I was having to educate myself about my disease, and I was sorting through a lot of information from both good and bad sources. A lot of things made me worry about getting worse that were actually nothing at all.

Comparing Lockdown and Chronic Illness; blog; Myasthenia Gravis; Coronavirus
We are all on edge about getting sick, which makes us feel bad.

I’ll compare that chronic illness newbie experience to what many are currently experiencing with the pandemic hitting the US right as Spring is arriving. I am certain that every allergy suffer has had to take a step back at least once to keep themselves from thinking pollen irritation is the beginning of a bout of COVID-19. Such anxiety is completely natural and understandable.

Uncertainty

A good deal of chronically ill individuals are on disability and fall prey to the whims of government policy for having income and coverage for necessary medical treatment. I compare this to the current pandemic population relying on the government to provide financial relief and also to have a system in place that insures sick people get the treatment they need. A great deal of the world is living in economic uncertainty during the pandemic.

When you are chronically ill, the only certainty is that there is no cure. That is a one to one comparison between chronic illness and COVID-19 at this writing. Chronically ill individuals will usually have fluctuating symptoms with some good days and some bad. In some diseases, remission (as is possible with my diagnosis – Myasthenia Gravis) can occur. Even in remission, you still have an underlying illness.

Living with the uncertainty of the type of day you’ll have symptomatically from one day to the next takes a lot of getting used to and accepting. That said, looking forward to the good days and not constantly dwelling on the downside is imperative. A proactive outlook during pandemic lockdown is also key. It’s kind of a glass half empty or half full conundrum. The COVID-19 pandemic has definitely changed our perspective, if only for the time being. It’s still best if we at least try to make the best of things.

Virtual Communication

I bet you are communicating via Zoom or Skype more than usual in lockdown. Virtual communication is always a must with chronically ill individuals as it is now to you in COVID-19 lockdown. From social contact, to support, to virtual doctor’s visits, the almost complete dependence on virtual communication that you are now feeling during lockdown is a way of life for many chronically ill individuals. Otherwise many are faced with a life in social isolation.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; Coronavirus; blog
Social Media is both a blessing and a curse during Lockdown.

There is a drawback to virtual communication, of course. When using social media, one must be increasingly wary of its affect on one’s mental health – especially in lockdown and true isolation. We all know about how difficult it is to navigate the field of “friends” on social media.

In addition to that obvious roller coster, fact checking is more important than ever, especially when relying on media sources for health advice. Even specific health forums and groups can be an unhealthy outlet. I can never say it enough, getting your mind away and off of illness is usually more curative than obsessing about possibly dicey information or being party to social drama in the guise of medical advice. A culture of illness is not always a good thing, even when approached in a fact finding sense.

Feelings of Uselessness

People under lockdown are feeling what it’s like to be ripped from a productive routine, which can be compared directly to the lives of the chronically ill. Most of us would probably like to help make things better somehow in the face of the pandemic, but how? That is how I feel at least one day a week in my normal life, and I am generally thought to have a good handle on the situation. Even though I create and promote art almost daily, and blog when I can (usually during IVIG treatment), the feeling can be almost overwhelming. Why am I even here now? What good am I to anyone? Will I be forgotten? Complete anxiety from isolation. The feeling of uselessness lurks constantly.

Comparing Lockdown to Chronic Illness; blog; Living with Myasthenia Gravis; COVID-19; Coronavirus; Melasdesign

Ironically, many chronically ill people are actually sailing along fairly unfazed during the pandemic. What the rest of the world is experiencing as new is the same old, same old for us.

Fatigue and Boredom

I’ve been hearing from almost everyone I know that they have been fatigued, or sleeping far more than usual in lockdown. This is often a response to stress and uncertainty. Chronic illness causes stress and uncertainty just like being in lockdown. Aside from that, some illnesses themselves and the medications that treat them can cause fatigue and sleepiness. One important way (for everyone) to battle this is to keep a schedule. The worst thing you can do is get your circadian rhythm mixed up – or have your days and nights reversed.

In closing, most people do not want to be as much of a homebody as the chronically ill person is forced to be. Combine the factors above, and it can boil into a helpless feeling, very bored person in lockdown. Most of us feed off of at least some contact with others for interaction and activity rather than choosing isolation.

Comparing Lockdown and Chronic Illness; blog; Living with Myasthenia Gravis; blog;
The gift of imagination that spurs on creativity rather than boredom.

A theme throughout my blog that I am now seeing over and over again on social media and in the news is that this is a fantastic time to start a hobby. A lot of folks fight boredom with television, but even it is facing a deficit with no sports on and no new material being filmed for shows and movies. Try something new. It IS possible. Look ahead. COVID-19 lockdown will most likely not last forever. Be good and stay home in the meantime.

Coronavirus and Myasthenia Gravis

This blog post is short and sweet. Is the Coronavirus still circulating and you have Myasthenia Gravis? If so, social distancing is imperative. It is an absolute MUST that you stay indoors at home, while also not inviting people in. Self-sequestering saves lives and lightens the load on your area’s health system. If you do venture out, be sure it is away from the public. Take advantage of any opportunity to have groceries and necessities delivered, or at the very least, travel along with someone to go shopping, but send them in with the list. The following post briefly explains how the virus and MG may interact while also suggesting some positive ways to get through this rather unusual and unfortunate epoch.

This blog post is short and sweet. Is the (Novel) Coronavirus still circulating and you have Myasthenia Gravis? If so, self-sequestering or at least social distancing is imperative. You are an immunocompromised high risk subject. It is an absolute MUST that you stay indoors at home, while also not inviting people in. Self-sequestering saves lives and lightens the load on your area’s health system. If you do venture out, be sure it is away from the mass public. You must practice social distancing. Take advantage of any opportunity to have groceries and necessities delivered, or at the very least, travel along with someone to go shopping, but send them in with the list. The following post briefly explains how the virus and MG may interact while also suggesting some positive ways to get through this rather unusual and unfortunate epoch.

As with any other virus, all-over Myasthenia Gravis symptoms may worsen. Even more concerning is the aspect that the virus is hardest on the respiratory system in any patient. In the virus’s worst cases, folks are having to be put on ventilators, with even that not helping in the end with a minor percentage in the overview of sufferers. Myasthenia Gravis can lead to the need for a respirator in Myasthenic Crisis, even when the lungs are free of mucous and viral activity. I can only imagine the strain that Coronavirus symptoms would put on an already weakened body already having a propensity towards failing lung strength from MG. Should you start having virus symptoms as a high risk individual, go see your doctor. Use a mask when cold or flu-like symptoms appear to keep contagions from spreading. Do all you can to keep that non-MG induced ickiness to yourself, and work on getting help.

For some people, self-sequestering seems like a terrible fate. My advice is the same as for folks who are mainly home based with Myasthenia Gravis (as I am). Get a hobby. Read a book. Call friends. Learn to cook. Truly, seriously with that one. Eating pre-prepped stuff out of boxes from the store really isn’t great for anyone’s health. Do that home project you’ve been putting off. Reorganize. Someone once said “If you’re bored, then you’re boring.” Don’t be boring. In my next blog post I go into an in depth comparison of how being chronically ill is similar to a life under lockdown. See if you agree.

Try not to rely on social media and questionable television as your means of breaking the monotony that inevitably arises when stuck at home to avoid catching Coronavirus on top of your Myasthenia Gravis diagnosis. As much as we all want to keep posted on developments locally and across the world concerning the virus, there’s still such a thing as only tuning in now and then. Stop. Center yourself. Look around at all you still do have, and hopefully the virus-free level of health you are still at. Follow the advice of the paragraph above and distract yourself. I’ve heard many healthcare workers say that people who obsess about the virus and all the news being constantly churned out about it are inevitably the people worse struck by illness. Fear and worry weaken the immune system, which would make any MG patient an even more high risk potential COVID-19 victim. Don’t add extra strain on your natural defenses by obsessing or becoming a victim of fear mongering.

The Truth About Being a “FALL RISK” with Myasthenia Gravis

I am a Myathenia Gravis patient reporting my inpatient experiences regarding misunderstandings and occasional inaction by medical staff when weakness symptoms suddenly developed with this “invisible disease.” I explore the realities of being a “FALL RISK” for those who have Myasthenia Gravis. Experiences which risked injury from falling and collapse occurred both in hospitalizations specifically for Myasthenia Gravis and for non-MG related inpatient stays.

An Invisible Disease

On good days, Myasthenia Gravis is an invisible disease. On strong days when ptosis is not out of hand and other facial and neck muscles are behaving, MG patients look like healthy individuals. We function as healthy individuals. Only a possible scar from a thymectomy serves as a visible sign that something might be amiss with our health. People even misinterpret the scar as being from a thyroid operation, rendering Myasthenia Gravis even more invisible.

Unfortunately this status of normalcy can change at a moment’s notice with little to no warning. The sudden development of weakness provides for true shock value to the average observer when our muscles cease to function on a day that has thus far been a strong one. Occasionally the MG patient might be met with disbelief that anything is actually wrong when sudden weakness sets in. Surely we’re faking! This disbelief can actually be dangerous for the myasthenic patient with this invisible disease. Although there are surely doubters in every walk of life, the group I will focus on here are medical professionals. To be even more specific, I write of misunderstandings with techs and nurses.

Photo by David Gavi on Unsplash

Fall Risk and Myasthenia Gravis

A year and a half ago I checked in to the hospital for emergency IVIG treatment. It was my first run-in with medical professionals who were more inclined to believe I was faking not being able to walk than they were inclined to actually help me with the problem. I alluded to the event briefly in my blog post “A Bit Too Close to Myasthenic Crisis.”

As appalling as it was to face plant (thankfully into a bed) as an unbelieving nurse looked on, I only wrote a word or two about it. As awful as it was there also to have techs apparently think that I was simply wanting attention (or ?????) in needing help to get to the bathroom for two entire days, I did not write about it. Surely that was just a terribly odd and unusual experience, despite the fact that during that stay I was actually hospitalized FOR Myasthenia Gravis treatment. I wrote it off as a fluke. I tried not to be overwhelmed with the grim reality that the healthcare workers caring for me did not recognize the ins and outs of the very illness that had hospitalized me.

Other minor run-ins occurred at outpatient private medical practices. Without the hospital hustle and bustle, doctors were close at hand to identify my stumbling and weakness more quickly. None of these incidents compare in severity to another in-patient experience I had earlier this month. This time I was inpatient at yet another hospital for a health issue unrelated to Myasthenia Gravis. The only indicator given that I had Myasthenia Gravis other than doctor’s notes was a yellow wrist band that said “FALL RISK.”

Unexpected Weakness

After several days of good mobility (with only so far to walk), I found myself slowly collapsing half-way down a hallway. At the head of the hall, I could walk fairly normally. Halfway to my destination I sensed my last successful step. Despite my yellow wristband “FALL RISK” status, I was provided no cane, but had managed until then. Now I awkwardly pressed my knees into each other to keep my legs from completely buckling. My hips and pelvic floor were painfully the only truly functional supporting muscles. A nurse standing nearby, buried in her chart, ignored my pleas for her attention.

via GIPHY

The first time I called out, she completely ignored me. After trying once again to move, it just wasn’t happening. I began to waver, and the pain of stressed hip area muscles was smarting. Once again, I called to the nurse saying “I don’t know your name, but please help. I can’t walk.” She dismissed me, saying she was busy. I would have waved my “FALL RISK” banded wrist around, but I knew such motion would result in imbalance and crashing. At this point my voice became more urgent and I begged for her to please help me – that I was collapsing. At this point, all of the patients present were looking on in rapt attention, forbidden to interact physically.

In behavioral health institutions, patients are forbidden from having any physical contact. All of my fellow patients wanted to help, but these things can be misinterpreted by staff. It was against the rules. I was also not allowed to have my cane, due to its status as a weapon thanks to its construction with a hard resin knob atop the wooden stick. This made my invisible disease even less obvious. I never managed to get a cane or wheelchair from the hospital. Such a thing is more difficult than it should be in physical health hospitals even. In a psych hospital it’s near on impossible.

Once my tone of voice and the audience grew, I finally got a smidgeon of the nurse’s attention. She came the few steps towards me and said, “Of course you can walk! Just move your leg.” By that point I was getting very angry and was in great pain from compensating for my leg weakness, but I knew that any show of negative emotion could be interpreted as aggression. As best as I could without actually falling over, I made a tiny hip motion as a pseudo attempt at taking step (which I decidedly could not manage). By this point I was straining my pelvic floor muscles. She then said “why do you think you can’t walk?”

via GIPHY

You must remember, I was in a MENTAL hospital. Of course, it was “all in my head.” Admittedly the nurse had not yet seen overt symptoms of my invisible disease. I replied that I have a neuro-muscular disease called Myasthenia Gravis. At this point my locked knees started giving way, and she still looked on in disbelief. Finally I broke the cardinal rule and called directly to the other patients for help. They immediately started running, having believed the situation all along, while looking on in horror at the nurse’s inaction. The “FALL RISK” wristband (even without knowledge of Myasthenia Gravis and the weakness it causes) said enough to alert them.

No Faking

Once the nurse saw their willingness to help, her eyes got big. The realization had finally hit that I was actually in trouble. She was then of zero practical use in helping, not even knowing how to offer proper support for me to walk once she actually deigned to offer a hand. Psych nurses apparently aren’t as directly trained in physical maladies as much as a physical nurses are.

Two patients helped in the end, and I managed to avoid any injuries from falling, but for strained pelvic floor muscles. I managed to get to a chair in a nearby room to finally collapse fully. The nurse then asked why in the world I would try to walk if I couldn’t. I declared that Mestinon (an oral medicine for Myasthenia Gravis) would help. She then simply declared that the nurse’s station was at the other end of the hall and walked off.

Last year there was another such hospitalization (don’t get me started about Easter and triggers) at a different hospital. During that stay I also unexpectedly collapsed in weakness from Myasthenia Gravis symptoms. I received prompt help in that case from a psych nurse nearby. A few months before that I collapsed at a private doctor’s office. The confused office staff helped me fairly quickly. It just shows that it’s a roll of the dice as to what type of staff you’ll get at any hospital or even doctor’s office.

Injury from Falling

One thing I have learned from collapsing from Myasthenia Gravis is to stay calm. Generally as long as I’ve stayed put afterwards, symptoms have not worsened any further. I always make sure I have Mestinon on me (which is not permitted in hospitals). As long as I haven’t been in a hot room or outside in sunlight, I’ve been fine after collapsing. I just accept that I shouldn’t try walking for a while. Nonetheless, falls can cause injury. That is why patients with Myasthenia Gravis are tagged as FALL RISKS. Once I got a concussion once, collapsing into the seat of a car. The short walk in a hot parking lot was too much. Another time I twisted my ankle while collapsing forwards towards a place to sit.

Yell for Help

I unfortunately don’t have a good answer as to how to prevent such misunderstandings. Misunderstandings are inevitable with this invisible disease – even when collapsing from weakness. One would just hope it wouldn’t be from medical professionals. Inform your nurses and techs of the FALL RISK when you meet them. When you’re sick in the hospital this is not always easy to do. Sadly it seems that there truly are enough patients purely seeking attention that there is often reason for healthcare workers to be skeptical. In hindsight, I wish I had just started screaming “HELP!” during the incident. In a setting that requires calm and quiet, this can be disruptive. I shouldn’t have had to resort to any of this, but in any type of hospital, medical workers often completely ignore wristbands.

Should I Get a Scar Tattoo?

Tattoos decorating scars are a bit trendy now. I sometimes dream of a tattoo with the words “Myasthenia Gravis” inked onto me in a suitably “street” font. My thymectomy scar would be the text’s baseline. Now I’m thinking getting the words “FALL RISK” might be more prudent.

Georgetown University Hospital MRI Music

Wondering about MRI noise level at Georgetown University Hospital? As of June 19, 2019 Georgetown University Hospital Radiology offers music during MRI tests via FM radio only. It is not possible to bring your own music. There is no iPod / Device hookup and no CD player. For tests that require your head to be still, no music is usually possible. The earphones that provide the FM radio sound are big enough that most patients cannot wear them due to space limitations. Together with headphones, the cushions used to immobilize the patient’s head for a clean scan cause uncomfortable crowding. I was not able to get this information on the hospital website or from the radiology department phone operator. I hope this might help other patients who are wondering about how to best handle a long scan. All that said, the hearing protection provided plus barrier cushions for head immobilization made my scan experience entirely bearable. For some reason, MRI noise at Georgetown for a lumbar spine scan was much louder than upper spine and brain. My MRI experiences at Inova Mount Vernon were much louder than my Georgetown University Hospital MRI experience. That might have been blamed on lesser hearing protection. Just a tidbit from a gal dealing with a somewhat rare disease and getting some other mighty odd stuff looked into. Be well and healthy, and have a good test with Georgetown University Hospital Radiology.